Pancreatic Cancer

Financial and other practical issues

People with cancer may experience financial hardship, and may be entitled to one or more government benefits, such as Statutory Sick pay, Employment and Support Allowance (which has replaced Incapacity Benefit), Personal Independence Payment or Attendance Allowance. For more information, see our resources on 'practical matters'
Some people we interviewed had had an employer who had continued paying their wages or salary while they had treatment, so they hadn’t needed benefits.
Michael’s wife was on a ‘very good salary’ so his illness did not have a ‘massive’ financial impact. Vicky’s husband worked for a ‘very understanding’ company. His boss gave him time off to accompany Vicky to all her hospital appointments. Alison’s husband also worked for a ‘brilliant company’ which allowed him to have as much time off as he needed, so her illness had no financial impact on the family either. May, a pensioner, was adamant that her illness had caused no financial problem; she had managed very well because she was ‘thrifty’.
Others were less fortunate. Tony grumbled that he worked for a ‘mean company’ and that he had had to manage on Statutory Sick pay. He knew that this benefit would soon end and he didn’t know whether he was eligible for other benefits.
William’s employer ‘had not helped him at all’, and he had had to apply for Disability Living Allowance (replaced by Personal Independence Payments for those aged 16-64). At that time this was a non means tested and tax-free benefit for all children and adults who needed help with personal care or had walking difficulties. William sought advice from Citizens Advice Bureau, who helped him apply for benefits. Others we interviewed asked nurses to help them fill in the long application forms for benefits (also see ‘Other sources of support’).
When Adrian first became ill his GP thought he had irritable bowel syndrome and she refused to sign him off as sick, which meant he couldn’t claim benefits. This was hard because Adrian was in a lot of pain. After doctors found he had pancreatic cancer he could finally claim Statutory Sick pay and then Employment and Support Allowance. He applied for a Macmillan grant (see ‘Other sources of support’) and also other benefits.
Donna’s husband had given up his job to care for her when she became ill. Steve and his wife both worked overseas in the same organisation, and when he fell ill she had to give up her job too, so their income dropped suddenly. A Macmillan nurse helped him to apply for benefits (see ‘Other sources of support’).
Some people had thought they were not entitled to certain benefits and so hadn’t applied for them.
Fred lost three months Disability Living Allowance because he didn’t know it existed. He was upset at losing three months of that benefit and also by being in danger of losing his Employment and Support Allowance. People can claim Employment and Support Allowance after Statutory Sick Pay has stopped. To qualify for Employment and Support Allowance, an applicant needs a Work Capability Assessment. Fred had been medically assessed as fit to work. The Maggie’s centre had appealed on his behalf and he was about to go to a tribunal to discuss it.
Ann said her Macmillan nurse had pointed out that she was entitled to immediate benefits such as Attendance Allowance and a blue badge for the car; benefits which might have been delayed many months for someone who did not have a terminal illness.
Illness can add to people’s outgoings too. Helen, for example, explained that after her operation she needed the fire on all day as well as the central heating, which put up the cost of heating the house. Helen had claimed only Statutory Sick pay, which is usually paid during the first 28 weeks of sickness (except for the first 3 days) to people who earn more than the minimum earnings threshold (£116 per week in 2018). People who are not eligible for Statutory Sick Pay may be able to claim Employment and Support Allowance. The UK governments benefits system is constantly changing, please see GOV.UK for more information.
Bob pointed out that ill health prevented him from doing jobs around the house, such as decorating and electrical repairs, so he had had to employ someone to do things that he would have done himself when well.
The cost of going to and from hospital for treatment was another added expense. Petrol was expensive and sometimes people needed a taxi. Parking at the hospital incurred extra costs too, unless people had a disabled badge and could find a parking place for disabled people. Some people had applied for a disabled badge for parking (Blue Badge Scheme), and William was pleased because the government had paid his road tax.
Parking space at the hospital was often difficult to find. Hamish complained that he had to allow at least an extra half an hour to find a parking space. Bob noted that one week he had been to the hospital five times for treatment, a 50 mile round trip each day. People on low incomes can sometimes reclaim the cost of transport to and from hospital.
Ben didn’t have a car so he used hospital transport. Hospital transport provides a way for patients who find it hard to use other forms of transport to get to and from their hospital appointments. The transport is usually authorised by a person’s own doctor, not by Trust staff, but Ben said that his trials nurse booked his transport. Any further follow-up visits requiring transport can be authorised by the doctor or nurse in the hospital clinic.
Higher travel insurance was another problem for many of the people we interviewed. As soon as people told their insurance company that they had pancreatic cancer, or if they mentioned the word ‘terminal’, their holiday insurance premiums shot up.
Some respondents suggested that people can still find ‘reasonable’ insurance if they ‘look around’. John (Interview 40) said that his bank had always covered his insurance. Richard (Interview 22) decided to take out insurance which would cover everything except problems associated with cancer. Dorothy obtained a copy of a letter that her consultant wrote to her GP and used it to obtain insurance cover that was only a ‘little bit dearer’ than ordinary insurance. She stressed that the letter did not mention a ‘terminal prognosis’. Rory decided to go to Europe without insurance. She explained that if she became ill she would use her E111, go to a local hospital and then fly home as quickly as possible. The E111 form is no longer valid. The new, free European Health Insurance Card (EHIC card), also called the EU Medical Card, is available via the NHS. People can apply for one online or visit their local post office.

Macmillan and Maggie’s centres have lists of insurance companies specialising in this area. 

Last reviewed September 2018.
Last updated September 2018.




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